Written from the heart, this is the unadulterated truth of life with multiple chronic illnesses and being housebound. My life open for you to follow. Please join me

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It still hurts

If there is one thing that living with chronic illness that we become good at, it’s dealing with loss. Loss of friends, work, hobbies, families and even those we thought would be with us forever. Loss goes hand in hand with illness and some of us get so used to it, that we see it as something we are actually good at. Quite often when we lose something, we can replace it, and often that replacement turns out to be even better than it’s original. But I guess that all of us have one thing that is just too painful, too big for us to ever replace, or ever get over. In some ways, I am lucky, as that one thing for me, only comes around once a year. In others, I’m unlucky as there is absolutely nothing I can do to avoid it, as whatever I do or where ever I look it’s there. Well, how do you avoid Christmas?

Christmas for me lasted four months, from the point it was time to bake the Christmas cake and pudding, to the last chance there was to buy cut-price decorations, cards and wrapping paper that the shops don’t want to store till next year. Actually, it didn’t even really end there, as I bought present all year round, whenever I found that perfect thing for each and every person I knew, I squirrelled it away, this, that, and everything that said Christmas and I did it with love and total joy on my part. Then came my last Christmas, the last chance to give all those gifts, to enjoy every second of decorating my home and making the whole season special in every way. All of it was taken away and there was nothing to replace it.

For those who can’t quite see how my health stole Christmas, well it’s easy, it did two things that ensured that Christmas was over. First, it took my ability to work and therefore the money I needed to spend on all those parts needed for the big show. Then it stole my energy, my dexterity. I could no longer spend days decorating every room, setting our all those thousands of lights and ornaments, putting together those tiny details that turned our home into a Victorian tableau, but one better than any Victorian could ever have even dreamed of. It was designed with the exacting perfection, every ornaments placement and angled perfectly for a viewer’s eye. Days of planning, days of work and years of collecting all gone, just like that.

The first year that I knew I could no longer do all that was needed, I thought I could manage a scaled down version, but scaling down, just didn’t work, it wasn’t right and every second that it was wrong, hurt me. A scaled down Christmas was worse than no Christmas at all. The second, I let Adam do all the work, while I sat there like some kind of short-tempered director, being driven mad by a performer who could never deliver their lines, in the way they were in my head. Followed by my secretly spent hour after painful hour, trying to make the surface correct, even though the correct foundations were missing. The third, I banned Christmas, not even one single tree, nor a single ornament was unpacked and I found peace. My home as it is, without Christmas was better than a pale imitation. Yet, here I am on our fourth December without Christmas, and I can still see every single perfect tree, even without closing my eyes. Just as an amputee still feels their toes, I can still see Christmas around me, just as it should be at this stage of the month, everything done, everything complete, parcels completed with decorations all of their own, concealing there equally perfectly thought out gifts, all just waiting for the big day.

I coped when I found that I could no longer work. I replaced all the things I lost, one by one I could manage but all these years on, I still miss Christmas and there is no replacement, there is nothing that can take its place, nothing that can even come close. How do you ignore something so big, something that is on TV from November onwards? How do you replace something that is irreplaceable? If it wasn’t bad enough that I’m being forced by my health to live without it, I’m also being tortured by the world, telling me just what I’m missing every second of the day. And worse still, I feel like Scrooge, because I’m taking Christmas away from Adam, just so I can hold onto a little sanity throughout this month of the year.

Chronic illness sucks. It sucks in so many ways including the odd ones like this that aren’t directly the fault of my health. People try to understand when it comes to our bodies letting us down, but they don’t understand, when it something odd like this. I’ve been told that I’m being silly, that not everything can be perfect any longer and that I should accept it as it is. Well here’s the crunch, I’ve accepted it throughout my illness, my home isn’t perfect any day of the year, but Christmas is big, it’s flashy, it’s amazing and for me, it has to be perfect, otherwise, it’s not worth doing at all. We still celebrate the day, like all we eat too much good food, but now, it’s just the two of us. No gifts, no crackers, no table perfectly set with candles set among crystallised flowers, everything that the modern world and my brain says belongs as part of Christmas, are all missing. What we lose, isn’t always what others see. What we lose is often far more personal and completely invisible, and somehow, because it is so personal, it hurts even more.

Most of it does, but don’t forget, there is demyelination of our nerves as well. Hence the fact we can get isolated pain in places where our brain doesn’t explain. MS is sneaky and if it has effected our vagus nerve, well the sky is the limit. That one nerve controls almost all our major organs and lots of pain (((Hugs)))

Thanks for putting your honest words out there. It is so very true that many times what is lost is invisible to others. And it’s hard to communicate the hurt. I wish I could say something to help. My hope is that you can find some pleasure in the season. Thank you for sharing this, friend.

I hear you sister! Now, I just buy my own damn gifts and after being held hostage last year at my mums. I hibernated in mums bedroom alone with my cat. Every time I came out to socialise I was shoo’ed away. I lost my independence instantly as I can’t find my things in the fridge and don’t have room to get them out and put them down somewhere. I was planning to stay at home with Jamima my fur-baby but I gave them enough notice to not feel guilty but make me feel bad for her not to feel guilty. So, now I’m going. Hostage situation again.

Families have a knack of turning the guilt on, them making you pay for it. If I were you, I’d politely make my excuses as soon as the meal is over and leave. That way, you’ve done your duty, but you’re still asserting your independence from them, plus your fed and getting your space. No more a hostage. 🙂

I do know how it feels, always giving up more pieces of that puzzle that makes you…the energy trying to focus on something new that brings you joy and yet not trying to get too attached to it, because you don’t know how long until that piece gets lost too. It’s hard to deal with, it’s hard trying to get people to understand that how you felt yesterday doesn’t reflect how you will be today and that today is not tomorrow, but you have the wonderful gift of finding the right words to tell it like it is, that can give energy and hope too, if not only for you, then certainly for others! Wishing you all the best!

If we could make others understand what is happening to us, then our lives would be simple. Yes, I can find the words when I am writing, but they always escape me when we talk. I know because others like you tell me, that my words do have meaning and aren’t just the jumble that falls out of my head.

Stay strong and have a wonderful time how ever those pieces come together this Christmas. 🙂

Most of my Christmas items are packed and I cannot decorate until after the House Inspection, if at all.
I just focus on what I believe is the true meaning of Christmas.
Why don’t you and Adam at least exchange gifts? You could make or online order him something. .or even write him a special poem since you are so good at writing.

Adam and I don’t do the presents, for us just spending time together and enjoying a day of good food and TV is enough. It’s not my idea of Christmas, but it’s a special day where we just celebrate the fact we’ve made it through another year.

I hope you have a happy time too, how ever you choose to enjoy this time of year. Take care of yourself and stay strong 🙂

Chronic illness does suck.. I can relate because you do feel like it steals your whole life.. my daughter and I were looking for a Christmas 🎄 yesterday .. and she said if you’re not in the Christmas spirit we’ll just forget.. walking and standing for long periods of time is so hard for me.. and it shows on my face if I do it too long which usually more than 10 minutes.. it’s not that I don’t have the spirit.. it’s the pain of trying.. no one understanding.. I’m truly sorry about your Christmas..

If we could stand and walk, if we had the energy to disguise what shows on our faces, we wouldn’t be ill. That is where the understanding falls apart and that’s where my Christmas went.Yet I hope you have enough still in you, to be able to enjoy at least one more Christmas. 🙂

Hello Pam,as always you tell it like it is,I understand exactly what you say and why it is.For me it’s the absence of control,I used to do it all,no one could do it like me.I have learned now to accept that people do their best,it’s not my best but I’m grateful that they bother.Iwish you a peaceful loving Christmas and my very best wishes for 2017.Love Nx

I know that there is a large degree of loss of control mixed in there for me as well, but it far far more when it comes to Christmas. As I said, I live daily with a home that it is far from perfect, but this one point in the year, I just can’t accept it. Loss is a funny thing and it affects us all differently and the things we pine for are rarely the same.

I too wish you a wonderful Christmas and happy New Year, when it comes 🙂

I used to love Christmas and then my grandson died 5 years ago. I no longer care about Christmas and Thanksgiving. They are painful for me. I don’t tell anyone though. If it were up to me, I wouldn’t decorate either but my husband wants to so I will do it if he ever gets the 30-year-old tree up from storage. That tree has aged better than I have. It’s amazing. I wish I were made of plastic too.

It may have aged better than you, but I don’t thing spending eleven months of every year sat in storage, wouldn’t be much fun.

Your loss is a very different one and I am sure that everyone can understand how you feel. You say that you don’t tell anyone, well you just told me, so don’t stop! It time your feelings were brought to the front and to be considered. Talk to your husband, you might be surprised to find he is doing Christmas for you. You two have to talk about this 🙂

Thank you for this! I remember the first time that reality smacked me in the face. I was trying to put my bicycle in the SUV and I didn’t have enough strength, coordination or dexterity to make it work. I had a total meltdown complete with hysterical tears and a phone call to my husband. He was more than willing to come home and do it for me. He missed the point that I was really upset about my body letting me down. I was always a very strong and active woman. The loss of Independence and imposition of limitations has been unbearable for the past 8 years. God bless

I guess for you, that bicycles are now not your favourite object. Loss is hard to handle and all of us find our way through the myriad of things that we lose along the way, but that first biggie, never goes away. The only people who truly understand, is us and those who have lived through something similar. For me, one of the biggest gifts that the internet has given us are other peoples blogs, because now we know, we’re not alone.

I often resent Christmas, it is thrust upon us by society whether we want it or not. I would be happy if it were every other year. I would say to you to enjoy your freedom from it, but you feel differently about the holiday..